We've had a good couple of days here, Friday's big excitement was a spa day for the girls! Both Emma Kate and Gretta got good thorough baths and head scrubs followed by a nice rub-down with lotion. (Gretta in particular was in desperate need!) Emma Kate got another visit from the speech pathologist and was given several sips of thickened apple juice and she did really well with it- we sort of expected that she would be evaluated again with the baruim swallow, but nothing was mentioned, and now apparently not much happens in that department on the weekends... so I assume we're waiting until Monday for further evaluation. She's done well especially eating some oatmeal in the mornings, other than that she'll take a little taste of applesauce, pudding, or yogurt. She doesn't have too much of an appetite since they're providing her nutrition through her TP tube, so we're going to switch her to a higher calorie formula and cut it off from 5am till noon each day. This way she's still meeting her caloric needs but maybe she'll feel hungry for breakfast and lunch. We've got to get her eating significant amounts before we can pull the tube, and the sooner the better- it's driving her crazy, and we're so paranoid it's going to get snagged by a little finger again!
Emma Kate is doing great with her physical therapy- she's walking better and better, still needing assistance, and we're trying to work on her balance and coordination. It seems she's not yet focusing on things, as she has a hard time grabbing items sometimes, and her eyes don't quite match up yet... she's a little wall-eyed still.
Today her sleep was broken up every few hours by some good awake time so we're hoping we're moving in the right direction for figuring out night vs daytime. Her clonidine patch was removed today and we're going to start reducing or just stop the rispirdol.
We've got some great videos to post, but we're having trouble getting them to load... we'll keep trying!
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